Wednesday, August 22, 2012

Part 1: Review of "From Grief to Celebration"I don't know what was in your Down syndrome packet after you connected with your local organization - and I don't know what your initial reading list was. But I'll tell you this: in my packet was "The Light at the End of the Tunnel" - hello there, death! - and on my bookshelf were real winners that depressed the dickens out of me - like Babies with Down Syndrome: A New Parents' Guide.

I read tomes about parents dealing - their stories of learning to accept and love their children, but in all honesty, I think when you are faced with the knowledge that your unborn child will be coming with an extra chromosome, it's enough to just grapple with all the prejudice and stereotypes out there regarding Down syndrome. It's hard to really, truly handle and relate to many of the memoirs - those have a better time and place later, in my opinion.

Margaret "Gary" Bender (- yes, she is a woman and her nickname is "Gary"!) wrote a gem of a slim book about how her family learned to embrace Down syndrome. She divided the book into 10 chapters - with a bonus one! - and folded each of the chapters into a verb that related to her path of 'grief to acceptance'. They are short. They are easy to read. They are, in my opinion, bite-sized, perfect for a new parent, or one who is just entering the world of parenting a child with Down syndrome.

The chapters and topics covered are flexible in that they are not too specific nor too broad. As they speak from the mother of a teenager with Down syndrome - rather than a young child - there is a ring of assurance, confidence and positivity that can only be gained from years of actual experience. While there is an awful lot of material from parents of young children with Down syndrome, there is remarkably little from parents of older teens.

I personally enjoyed the anecdotal natural of the book. Gary is a blogger, and her book reads a bit like a blog. It's direct, unpretentious. I wish I had read it when I was first starting out - and I sincerely hope word spread on this great little nugget, giving new parents a glimpse into a happy future, with pointers to be aware of along the way.*******************************************************Part 2: Interview with Margaret "Gary" Bender1. You have written a book about your daughter Alex who was born with Down syndrome - and your experience as a parent of a child with Down syndrome. Why did you feel the need to write this story?When Alex was born 19 years ago, we met many families with children with Down syndrome, who guided us and shared their promises of the future. A lot has happened in those 19 years in terms of education, inclusion and acceptance and I hope to share the lessons of our journey and the message of the promise of a bright future for families with young children with special needs.

2. What do you hope readers will gain from your book and your perspective?My hope is that readers will learn from our journey, and embrace Down syndrome as an unexpected opportunity to grow and learn.3. What was the most challenging aspect of telling your story?

I tend to be a Pollyanna at times, and I do not want to give the impression in the book that life is always rosy. Certainly we have bad days or weeks, but these times pass and we move on. Life for us is not always a bed of roses, there are also thorns.4. If you had to write it all over again, would you change what you said in your book? If so, what would that be?I would focus more on our educational and community based experiences, and provide detail about how the right supports, services and confidence facilitate success for all children. My husband likes to say "it takes a village" to raise a child, and this is true of children of all abilities. 5. How did you come up with the title of your book and how do you think it reflects on the story's overall message?The title is derived from the ten chapters, (plus one bonus chapter!) or verbs I use to describe our journey.

6. What was your favorite part in your book?That's a tough one as it was great to relive the last 19 years. I guess I would say the chapter entitled "Incorporate" where I share Alex's siblings reflections on having a sister with Down syndrome. They have grown up to be caring and compassionate people, who are (unknowingly) active advocates for all people with disabilities.

7. If there was one overall message that you'd like your reader to come away from From Grief to Celebration with, what would it be?I quote from the final chapter of the book "Celebrate"."Everyday we celebrate the pure joy of Alex, our beautiful daughter, sister, granddaughter, niece, cousin, student and friend who continues to enrich our lives in unimaginable and immeasurable ways. Her very existence has given us the power to become better people and more emphatic community members".8. What projects are you currently engaged in? Any new books from you on the horizon?I really enjoy posting as often as possible on our blog, "The Ordinary Life of an Extraordinary Girl". Currently I am republishing the "Educating Alex" series, which shares our experiences with school from birth through high school. Perhaps that would make for a good book! I'd also like to document Alex's journey from high school, through college, employment, relationships and adult life.

9. What question have you always wanted to be asked in an interview? How would you answer that question?This is a question I am often asked and enjoy answering - "Where will Alex live when she is an adult?" And my answer - "Where ever she wants". I do have some caveats however including safety, access to employment, social opportunities and transportation.

10. Do you have any questions for the reader?What are your child's dream for their futures and how will you honor them?